Living with a disability - What a blessing.
Thoughts and lessons learned along the way.
Written by Michael B. Gerber

Friday, May 29, 2009

What defines you?

My mom was a beautiful woman. As a young woman, she looked like Elizabeth Taylor in National Velvet. As she got to be in her thirties, she looked more like Mary Tyler Moore. She had a beautiful mane of brown hair and, as was the style at that time, she wore it big. Teased and standing what seemed like a foot over the top of her head. She was very easy to spot in a crowd. She was also the one person you did not want to have to sit behind in a theater. We are talking really big hair.

At some point during the 1960’s, she decided to become a platinum blonde, a fully teased, large mane, platinum blonde. In time, everybody knew her for her hair and she wore it that way for almost 40 years……except for once.

One year for her birthday, we decided to give her a makeover. A friend of ours was a hair stylist who also thought Mom was beautiful and was excited about doing the makeover. So we did it.

Mom looked beautiful. We did not change her hair color, but changed the size and shape and gave her a cut that was much more ‘current’. We changed her make-up and got rid of her orange and white lipstick (I don’t know when this look became popular) and shortened the length of her eyelashes. The makeover was a huge success. Mom looked tremendous and we had brought her up to date in our modern world. We had done something good and we were proud of ourselves.

There was only one problem. When Mom saw the makeover, when she finally looked in the mirror and saw herself, all she could do was cry! “My hair? What did you do to my hair? I look like a boy!”

I don’t think that she left her house for at least two weeks after that incident and I know that she must have spent hours every day looking in the mirror and trying to correct what we had done. Eventually she got a wig that, amazingly enough, resembled her own hair and she wore it until her hair had grown out enough for her to tease and resemble the “crown” she had worn for so many years.Her hair, her mane, her look defined her. Without it, she was no longer herself. Without it, she cried and could not leave her home for fear that someone might see her. It was how she saw herself and defined herself. It was her identity and for a period of time, we had taken that away from her.

After she got her wig and once her hair grew back, none of us ever mentioned the “make-over” again. However, I don’t think that any of us ever forgot the incident, especially her.

On the surface, this identity crisis may seem shallow and vain. But in actuality, it was much more than that. It was how she saw herself in the world. Suddenly and abruptly, that was gone and she felt that she no longer fit in the world she had known for so many years.

The question is this: what defines you? What if you no longer had your hair? Or could not sing or dance? Or see? Or walk? Would your life be over? How would you deal with a sudden or abrupt change in your capabilities, or worse yet, how you looked? Is it how you define yourself and could you redefine yourself if you needed to?

For many of us who live with a disability, we have had to do just that: redefine ourselves. For me, having a progressive disease has allowed me some time to adjust to the changes my body is making. Others, those who have experienced an accident or some other traumatic incident, had to change their view, how they see themselves in the world, abruptly and quickly. The ability to do that is the difference between moving on with our lives or not.

There are a million reasons why we may have to change what defines us and not all are caused by disease or trauma. A change in jobs, relationships, finances, even weight can be reason enough. The question we need to ask ourselves is this: “What defines me and if I had to change, could I?”

Most people will never have to answer these questions and that is a good thing. Yet, self examination is always a good thing too. After all, if change does happen, we don’t want to “wig out.”

9 comments:

Yes it does take a while to get used to change. It seems to have taken me 10 years to accept the wheelchair as an aide to get me around, instead of hating it. Now I love the fact that I can speed around the stores, do housework, normal things. Just a normal life with challenges.Kim

I really enjoyed reading this post and learning about your mom. She sounds like a "real pip" which, in my family of origin, is a compliment to describe a uniqure, well-loved character.I feel like my life is all about accepting and changing what defines me. Some of the things that used to define me were my freakish strength, my independence, and my massive amounts of energy. With MS, these attributes have definitely changed. I try to accept it but also to change my definition/demonstration of these attributes. Just because I can't drive doesn't mean I'm not independent. Just because I have to conserve energy doesn't mean I can't do a lot with the energy that I do have. Just because I can no longer lift one end of a sleeper sofa does not mean I am not strong. :-)Thanks for asking a great question.Juliehttp://lazyjulie.blogspot.om

wonderful piece! I help take care a girl with a major disability in the afternoons. I took the job to supplement the times when my business as an animal artist is slow, but came to see this 13 year old teaching ME so much! She never looks at her "disability" as that, but as a challenge and she is fearless. Since the time of her birth she's had 9 operations (yes), and yet, she never allows any of it to get her down.

How refreshing to see those, especially those who have not reached the senior years, to still be able to see what's within a person, not what's on the "outside."

Thanks for your great article about learning how to accept. We all need to accept big and little things every day of our lives!

I loved Lila. I loved Lila's hair. Lila was always Lila and she looked beautiful. I even liked her white Cadillac with the gold trim. She was one of a kind. And she was KIND. I'm sorry we were only friends for a few years before we lost her. I enjoyed her company and wished we could have been friends for many more years. She lives on in her wonderful children and grandchildren (and it is amazing how much her youthful photo looks like Jenica)!

This is really a well laid out website. I like how you have presented your information in excellent detail. You seem to really love your site. Keep up the great work here and please visit by my blog sometime. The url is http://healthy-nutrition-facts.blogspot.com

Your Mom was indeed a beautiful woman Michael. But......the story about her " make-over ".......and subsequent sadness over it........the fact that she no longer felt.....like " herself ".......reminds me of the biblical story of Samson. You asked.....what defines us ? Well......Samson believed all his strength came from his hair. Your Mom kind of did too. And......because they believed it......they were both right ! So I guess that's really the point......don't you think ? We are......so much of what we believe we are. Thanks for sharing a fine and touching story. You must miss her a great deal............peace and love......Norma

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About Me

I am a happy man. I am madly in love with my beautiful wife of over 31 years, Gail. I have two fantastic grown children, Jenica and Adam, now 29 and 27 years old. I am surrounded by incredible friends and lead a very active life. I also have MS. The progression of the disease has caused me to take an 'early retirement'. Today I spend much of my time writing and speaking whenever and wherever possible.
I write about life, living and perspective. I write about staying active, participating and waking up happy every day. I write about living life to the fullest with or without a disability.
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